Newly dx 14 year old - what will life be like?

[cassimw]

It's been a few weeks since my daughter's Crohn's diagnosis (she also has a fistula). Next week we are getting a second opinion on treatment, but it appears it will be Remicade and possibly 6MP or some other drug.

At first, it was overwhelming, but I think I had the idea that we'd just give her some medicine, things would heal up/go into remission, and then life would be back to "normal" again - and that hopefully there wouldn't be anymore flare ups if she stayed on the the meds.

The more I read, the more I get the idea that this is a chronic disease. And that although she could get lucky and go into remission right away, it seems more often than not that the meds won't work forever and that she will probably have a lifetime of switching meds to try to get ones that work, complications from the meds and the disease, which could result in operations and hospital stays, and missing lots of school, etc.

I just want to have a pragmatic outlook going forward. I know that none of you can predict the future, but what's more common? Should I prepare myself and my daughter that things may be good for a while, but more likely than not, she'll have a lot of struggles?

This sucks so bad. I know you guys can related.

 

[Mehita]

I know it's hard, cassimw, but for only being a few weeks in, I think you're doing great.

You summed it all up nicely, but as you said, it's hard to predict. The only predictable thing about IBD is that it's unpredictable. You're right, there are meds and if they work, they can work really well. My son has been on Remi only and in remission for two years. He's the walking definition of "invisible disease" right now. Looks great, feels great and you'd never know there's anything going on with him. But to get here, he had to try and fail several meds on the way.

I think all you can really do is just continue to educate yourself, try not to worry about the future too much (since you can't control it), enjoy the good days, and accept the disease as part of your new normal. I'll admit it often feels like we're always waiting for the other shoe to drop, that the disease is always there, hovering... BUT... I've learned that until it actually jumps in our faces, we can ignore it to a certain extent. I don't know if I explained that very well.

 

[Chester31]

My son was diagnosed when he was 14 and I naively thought that he'd be one of the lucky minority that goes into remission and stays there. More than 2 years down the line and after many medications, I'm not sure that he's ever been in remission but even though at times things have been difficult we have tried really hard not let Crohn's get in the way of the things he wants to do. He has been able to travel both in Europe and to the US, he's continued to play sport and worked hard in school earning fantastic GCSE results. He has the same hopes and dreams as any other teen and we will do our best, despite the uncertainty and unpredictability that Crohn's brings, to make sure that he fulfils them. It isn't easy, but Mehita is right - enjoy the good days and make the most of every one of them.

 

[Clash]

It's so overwhelming in the beginning that it is hard to see past the dx.

There's no way to truly describe it. My son's had meds that failed, been hospitalized a few times, had surgery switched meds yada yada yada. The hospital stays aren't vacations but sometimes you have to go. In the moment, they're all important happening but a week out from the stay they no longer affect his life, social, academic or otherwise. They occur, we moan, rage, cry about the CD then he moves forward.

He's definitely had more ups than downs more average teen life than out of the ordinary and doesn't really dwell on when it's bad.

It can be isolating, so getting friends involved during those times is great. C at 15 loved xbox live so he never felt truly isolated because that provided social interaction.

Now, things are okay, he's fairly anemic, possibly flaring and has appts and tests coming up. But he takes a full load at college, works 30+ hours at his job and spend an inordinate amount of time dt town living the college life.

It could get change, he might end up in the hospital again. But I don't think he thinks in those terms. He's 19, rarely does his disease or its state or treatment guide his thought processes he's driven more by whatever drives every other teen, freedom, independence, the latest craze..whatever.

It is a chronic illness and something they will have to be cognizant of on some level. A great tool is a therapist with a background in chronic illness.

 

[crohnsinct]

The beginning is rough. But once you find a drug that works and see your child out there living a more than full teen life it gets easier. There are plenty of kids in the infusion center we use who are 5+ years without a flare. My daughter is coming on 4 years since dx so 3 1/2 of feeling great. Sure there have been little blips here and there but in general I think now that we know what to look for we can sound the alarms before things get to bad.

Yes drugs do and probably will fail over time but by the time you get there, new drugs will be introduced and you will find your new magic. Just in the time since my daughter' dx 4 years ago there have been 2-3 new drugs introduced and a handful in promising trials now.

I think when you read online you tend to get a colored view of things. The people posting on line are the generally the people experiencing problems and looking for help. The people in long term deep remission are out enjoying their lives. We are lucky here that a few parents of solid remission kids still hang around to give advice and support.

 

[DJW]

I'm sorry about your daughters diagnosis.
As you know it's difficult to predict the course of this disease.
I can only speak from experience.

I was dx at 12/13
I've had very rough patches and a 20 year remission with no meds (I do NOT recommend that). While it can be hard, don't let this disease rule her life. Do the things she loves to do.

One thing I strongly recommend is counciling. It's a lot to adjust to as a teen.

I'm on Remicade and doing great.
Sending you both my support.

 

[positivemum]

You have found the right place in this forum as it a font of knowledge, a place to ask questions and just to sound off to those who understand!

Our son was diagnosed at 12 and had only just started secondary school and it has been a tough 4 and a half years but get informed, ask questions of the medical team working with you, become an expert in the condition. You will find the drugs that help eventually but it is a rollercoaster ride and we have found communication the key - as a family, to to others and his school. He is now in remicade and living a busy life as a 17 year old. The condition is always there and we as parents are more neurotic than our kids!! The way they cope puts adults to shame. Sometimes we just have to let them be.

Keep coming on here for support and good luck with things

 

[Jmrogers4]

It's very overwhelming at first and I think you've hit the nail on the head as far as most people's knowledge of the disease you either just take medicine or eat the right way and you are "cured".
But there is hope they are coming up with new meds all the time. My husband was dx'd over 20+ years ago and at that time standard protocol was sulfasine meds, he spent 8 years fighting through flares and we really planned every outing in terms of how was he feeling? were restrooms readily available? He was then put on a "new" med Imuran and has been in remission on that for the last 15 years. Now we think of Imuran as an old med and it has been around a long time.
My son, however was put on Imuran right away and it was never quite strong enough but kept him fairly stable, however, there was simmering inflammation that it was not able to get under control which affected his growth and development. He was stagnant for about 4 years at which time he flaring, added to the fact that his weight had remained the same for 3 years and he had only grown an inch over that time frame. He was still able to keep up with school and sports and family travel and we did not have to plan outings as much as we had with his father in the beginning.
He has not had any surgeries or hospital stays which I do count us as lucky, but all the other issues caused problems in their own regards. He has been on Remicade going on 2 years and is the healthiest I have seen and you would never know that he has any medical issues. I know chances are that he will flare again but he could also get 15, 20 or more years of remission

 

[cassimw]

I am so glad I found this forum. Several of you have even responded to more than one thread that I've started and I'm really feeling supported and understood here. I am reading each and every response with great interest. Thank you ALL so very much for taking the time to respond. I wish all of you the best with your children as well. Especially those of you who have more than one child or family member affected by IBD/Crohn's.

Still trying to wrap my mind around all of this.

 

[my little penguin]

Keep in mind this group is self selective so the sick kids parents tend to hang out here more
The ones doing well living life disappear often
Right med is key
DS swims competitively and doesn't look back
Just takes time and it will be ok

 

[Maya142]

I agree - it really depends. With my older daughter, she's mostly had a normal teenage life. Some big flares and lots of ups and downs, but she loved high school and is loving college!

My younger daughter has had a much harder time - missed LOTS of school, many hospitalizations in the last two years, many medications, many feeding tubes, many tests and lots of specialists and doctor's appts. However, she's still accomplished a lot - done really well in school and got into a great college. She has lots of friends and is a pretty happy positive person despite all of this. Yes, it's been VERY hard. There have been lots of tears (mine and hers!). I've hated all the diseases she's had and the fact that she's stuck with them at such a young age. It's been frustrating, isolating and painful for M. But she's also had a lot of fun and I think we're finally turning the corner (fingers crossed).

I agree with CIC - the parents who end up here tend to have sicker kids (though some whose kids are doing well make a big effort to participate). It's really individual and there's no way to predict how your kiddo will do. Seeing a psychologist who has experience with chronic illnesses really helped my daughter cope with all of this. She really resisted going but now likes seeing her psychologist - she says it makes her feel better. Good luck :ghug:!

 

[Clash]

Yeah I have to agree with others in that this forum may be a poor sample size since those who are in remission are thinking less of posting on CD forums.

IRL, I personally know several kids whose parents ha e never considered joining a forum or support group because meds put their kids in remission.

Not to mention dozens we use to see at remicade infusions who are doing great and have been in remission for years!

 

[Lady Organic]

The GI doctors I have seen have always been confident when treating me, always had a positive outlook and never been worried or ''prepared me for the worst''. They go one step at a time. This attitude is very different than some other health professionnals or even other doctors who clearly express fear to me when discussing my meds or disease. This is really counter-productive and doesnt help a patient in any ways. Its not necessary to expose the possible negative struggles that may happen and to worry at something that is not there at the moment if the patient is compliant to the treatment and care. As said above, many patients live long term well with very few struggles. Its best to live one day at a time and be positive the treatments will work. Moreover I firmly believe the future is very bright for us in terms of treatments and discoveries. Just 15 years ago, remicades and biologics were not on the market. These medications were a huge step in treating IBD and saved a lot of surgeries. many more great news to come in the next years. :dusty:

 

[Apey]

Hi there. I was diagnosed at age 16 after struggling 3 years with no answers. I spent a month in the hospital at christmas time including a stay at the icu because I was in septic shock. I missed quite a bit of school and still do. I'm currently on humira but just developed antibodies and already have antibodies to remicade. Finding somethingg that works will always be a puzzle for me I guess!

I'm a junior in highschool and that may be the worst part some days. You hear kids talking about how you miss lots of school and such, you tell yourself it doesn't affect you but it really does. It becomes overwhelming to have crohns disease some days. Any little thing will make me want to cry, and I'm tired a lot. Most kids don't understand because they see me as healthy, because on the outside, I look it. It's kind of like an invisible disease in ways.

Talking to family and friends helps a lot. Crying helps too. It helps to work through it and realize your life will never be exactly "normal" again but more of a life that you can handle and at some point you just won't feel like going out with other kids. You will want to sleep or hang out at the house.

Hope this helps!

 

[cassimw]

Apey - I think one of the worst thing about this disease is how it is common for kids to be diagnosed in their teens. It's hard enough being your age and dealing with the stress of school and just trying to fit in. Everything is intensified at that age as it is, and having a chronic illness is an extra challenge that kids like you and my daughter have to find a way to overcome.

Here's the thing, Apey -- most kids your age say and act in ways that are just, well, immature. It's just a lack of life experience and perspective. You're pretty close to your ticket out of HS and into college or the adult world where, although there are still idiots, there are less of them ;-) Please try hard not to let what other kids say/do affect you.

The fact that you took the time to respond to my post with your own experience really touches me and helps me know that my daughter is not alone and has an amazing network of people her age that are going through the same thing. I am hopeful that they will find the right treatment for you.

Thanks for your post.

 

[CarolinAlaska]

For my daughter, this has been a lifelong disease. It has affected her ability to stay in school, attend social events, stay on sports teams that she enjoys. She has never really found remission It's about waiting for doctors, doing lots of tests, trying new medicines. We enjoy every brief respite that we get, and always try to hold on to hope that the next thing we try will be the magic ticket.

 

[malorymug]

Hi. We are a year in a half into this disease and it does get better. Crohn's doesn't rule our life any more. I'm always on the lookout if he makes extra bathroom trips, or refuses meals, but I don't think about it all the time anymore.

I come here when I need a reality check or "is this normal?". The parents here can give a pretty quick consensus of normal teenage stuff or needs a call to the GI. An example is, my 15 year old boy fell asleep waiting for the bus after school and missed the bus. My first reaction was "geez, he is lazy", but many folks voiced concern and my GI got a call and we checked labs.

My child differs from his peers only with needing LOTS more sleep than they do, misses more school than they do, doesn't eat junk food, and gets to use the nurses restroom. That's it!

When he was first diagnosed I was waaaay too lax on my parenting. I let him get away with everything and didn't hold him accountable. We are now paying the price for that and working very hard to make new, good habits.

Our children need to learn to live with this chronic disease. We need to help them learn about their bodies and their disease, navigate through drs. and medications, tolerate pain and fatigue, all while learning to become adults. It is doable, little by little. I get great inspiration hearing about the kids transitioning into adulthood.